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Accessing Rehabilitation after Upper Limb Reconstructive Surgery in Cervical Spinal Cord Injury: A Qualitative Study 颈脊髓损伤患者上肢重建手术后的康复途径:定性研究
Pub Date : 2024-07-01 DOI: 10.46292/sci23-00092
Samantha B. Randolph, Allison J. L'Hotta, Katharine Tam, Katherine C. Stenson, Catherine M Curtin, Aimee S. James, Carie R. Kennedy, Doug Ota, Christine B Novak, Deborah Kenney, Ida K Fox
To investigate the barriers and facilitators to rehabilitation experienced by individuals with cervical SCI after upper limb (UL) reconstructive surgery. We conducted a prospective cohort study with a follow-up period of up to 24 months. Data collection occurred at two academic and two Veterans Affairs medical centers in the United States. Participants were purposively sampled and included 21 adults with cervical SCI (c-SCI) who had received nerve or tendon transfer surgeries and 15 caregivers. We administered semi-structured interviews about participants' experiences of accessing rehabilitation services after surgery. Four themes emerged from the data: (1) participants encountered greater obstacles in accessing therapy as follow-up time increased; (2) practical challenges (e.g., insurance coverage, opportunity costs, transportation) limited rehabilitation access; (3) individuals with c-SCI and their caregivers desired more information about an overall rehabilitation plan; and (4) external support systems facilitated therapy access. Individuals with c-SCI experience multilevel barriers in accessing rehabilitation care after UL reconstructive surgeries in the United States. This work identifies areas of focus to mitigate these challenges, such as enhancing transparency about the overall rehabilitation process, training providers to work with this population, and developing, testing, and disseminating rehabilitation protocols following UL reconstruction among people with c-SCI.
研究颈椎 SCI 患者在上肢(UL)重建手术后进行康复所遇到的障碍和促进因素。 我们开展了一项随访期长达 24 个月的前瞻性队列研究。数据收集工作在美国的两所学术医疗中心和两所退伍军人事务医疗中心进行。研究对象是有目的的抽样,包括 21 名接受过神经或肌腱转移手术的颈椎 SCI(c-SCI)成人和 15 名护理人员。我们就参与者术后获得康复服务的经历进行了半结构化访谈。 数据中出现了四个主题:(1)随着随访时间的延长,参与者在获得治疗方面遇到了更大的障碍;(2)实际挑战(如保险范围、机会成本、交通)限制了康复服务的获得;(3)c-SCI 患者及其照顾者希望获得更多有关整体康复计划的信息;以及(4)外部支持系统促进了治疗的获得。 在美国,接受 UL 重建手术后的 c-SCI 患者在获得康复护理方面会遇到多层次的障碍。这项工作确定了缓解这些挑战的重点领域,如提高整体康复过程的透明度,培训服务提供者与该人群合作,以及开发、测试和推广 c-SCI 患者 UL 重建后的康复方案。
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引用次数: 0
How Can We Treat If We Do Not Measure: A Systematic Review of Neurogenic Bowel Objective Measures 不测量,怎么治疗?神经源性肠道客观测量系统回顾
Pub Date : 2024-03-11 DOI: 10.46292/sci23-00065
Argy Stampas, Amisha Patel, Komal Luthra, Madeline Dicks, Radha Korupolu, Leila Neshatian, George Triadafilopoulos
Guidelines fail to recommend objective measures to assist with treatment of neurogenic bowel dysfunction (NBD) in spinal cord injury (SCI). The main objective was to review the literature to identify the objective measures used in all NBD populations and to present their results and any correlations performed to validated subjective measures. A systematic review of the literature was performed in accordance with PRISMA (2020) guidelines, including all records from January 2012 to May 2023 with MeSH terms like “neurogenic bowel” indexed in the following databases: PubMed, EMBASE, CINAHL, Cochrane Central Trials Register, and ClinicalTrials.gov. Abstracts were excluded if they did not include objective measures or if they only mentioned the esophagus, stomach, and/or small bowel. Records were screened independently by at least two collaborators, and differences were resolved by unanimous agreement. There were 1290 records identified pertaining to NBD. After duplicates were removed, the remaining records were screened for a total of 49 records. Forty-one records (82%) included subjective measures. Two-thirds of the articles involved the population with SCI/disease (n = 552) and one-third were non-SCI NBD (n = 476). Objective measures were categorized as (1) transit time, (2) anorectal physiology testing, and (3) miscellaneous. Of the 38 articles presenting results, only 16 (42%) performed correlations of objective measures to subjective measures. There is an abundance of literature supporting the use of objective outcome measures for NBD in SCI. Strong correlations of subjective measures to objective outcome measures were generally lacking, supporting the need to use both measures to help with NBD management.
脊髓损伤(SCI)患者神经源性肠功能障碍(NBD)的治疗指南并未推荐客观的测量方法。 该研究的主要目的是回顾文献,确定用于所有 NBD 患者的客观测量方法,并介绍其结果以及与经过验证的主观测量方法之间的相关性。 根据 PRISMA (2020) 指南对文献进行了系统性综述,包括 2012 年 1 月至 2023 年 5 月期间在以下数据库中以 "神经源性肠 "等 MeSH 术语索引的所有记录:PubMed、EMBASE、CINAHL、Cochrane Central Trials Register 和 ClinicalTrials.gov。未包含客观测量指标或仅提及食管、胃和/或小肠的摘要将被排除。记录由至少两名合作者独立筛选,分歧由一致意见解决。 共找到 1290 条与 NBD 相关的记录。剔除重复的记录后,对剩余记录进行筛选,共筛选出 49 条记录。其中 41 条记录(82%)包含主观测量。三分之二的文章涉及患有 SCI/疾病的人群(n = 552),三分之一为非 SCI NBD(n = 476)。客观测量方法分为:(1)转运时间;(2)肛门直肠生理测试;(3)其他。在提供结果的 38 篇文章中,只有 16 篇(42%)将客观测量结果与主观测量结果进行了相关性分析。 有大量文献支持对 SCI 患者的 NBD 使用客观结果测量。主观测量结果与客观结果测量结果之间普遍缺乏强相关性,这支持了使用这两种测量结果来帮助进行 NBD 管理的必要性。
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引用次数: 0
Association of Calcium and Vitamin D Supplements with Fractures in Persons with a Traumatic SCI 钙和维生素 D 补充剂与创伤性 SCI 患者骨折的关系
Pub Date : 2024-02-01 DOI: 10.46292/sci23-00057
Brian Le, Hongyan (Nathan) Xu, Frances M. Weaver, Zhiping (Jenny) Huo, Ryan Avidano, Piper Hurlburt, Sarah Morgan, Laura Carbone
Osteoporotic fractures occur in almost half of patients with a spinal cord injury (SCI) and are associated with significant morbidity and excess mortality. Paralyzed Veterans Administration (PVA) guidelines suggest that adequate calcium and vitamin D intake is important for skeletal health, however, the association of these supplements with osteoporotic fracture risk is unclear. To determine the association of filled prescriptions for calcium and vitamin D with fracture risk in Veterans with an SCI. The 5897 persons with a traumatic SCI of at least 2 years’ duration (96% male; 4% female) included in the VSSC SCI/D Registry in FY2014 were followed from FY2014 to FY2020 for incident upper and lower extremity fractures. Filled daily prescriptions for calcium or vitamin D supplements for ≥6 months with an adherence ≥80% were examined. Filled prescriptions for calcium (hazard ratio [HR] 0.65; 95% CI, 0.54-0.78) and vitamin D (HR 0.33; 95% CI, 0.29-0.38) supplements were associated with a significantly decreased risk for incident fractures. Calcium and vitamin D supplements are associated with decreased risk of fracture, supporting PVA guidelines that calcium and vitamin D intake are important for skeletal health in persons with an SCI.
几乎一半的脊髓损伤(SCI)患者都会发生骨质疏松性骨折,并且与严重的发病率和过高的死亡率有关。瘫痪退伍军人管理局(PVA)指南建议,摄入充足的钙和维生素 D 对骨骼健康非常重要,但这些补充剂与骨质疏松性骨折风险的关系尚不清楚。 目的是确定已开具的钙和维生素 D 处方与 SCI 退伍军人骨折风险的关系。 从 2014 财政年度到 2020 财政年度,对 VSSC SCI/D 登记处纳入的 5897 名至少患有 2 年创伤性 SCI 的退伍军人(96% 为男性;4% 为女性)进行了上肢和下肢骨折事件的随访。对每天开具的钙或维生素 D 补充剂处方≥6 个月且依从性≥80% 的患者进行了检查。 开具钙质(危险比 [HR] 0.65;95% CI,0.54-0.78)和维生素 D(HR 0.33;95% CI,0.29-0.38)补充剂处方与发生骨折的风险显著降低有关。 钙和维生素 D 补充剂与骨折风险的降低有关,这支持了 PVA 的指导方针,即钙和维生素 D 的摄入对 SCI 患者的骨骼健康非常重要。
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引用次数: 0
Co-design of the Spinal Cord Injury Health Maintenance Tool to Support Self-Management: A Mixed-Methods Approach 共同设计脊髓损伤健康维护工具以支持自我管理:混合方法
Pub Date : 2024-02-01 DOI: 10.46292/sci23-00042
James W. Middleton, Mohit Arora, K. A. S. Jerram, John Bourke, Melissa McCormick, Dimity O’Leary, Gerard Weber, Tony Lembke, Ashley Craig
There is a lack of consumer-friendly tools to empower and support people living with spinal cord injury (SCI) to self-manage complex health needs in community. This article describes the co-design process of the new SCI Health Maintenance Tool (SCI-HMT). Co-design of the SCI-HMT using a mixed-methods approach included a rapid review, e-Delphi surveys with range of multidisciplinary health care professionals (n = 62), interviews of participants with SCI (n = 18) and general practitioners (n = 4), focus groups (n = 3 with 7, 4, and 4 participants with SCI, respectively), design workshops with stakeholders (n = 11, 8), and end-user testing (n = 41). The SCI-HMT (healthmaintenancetool.com) was developed based on participatory research with data synthesis from multiple sources. Five priority health maintenance issues for bladder, bowel, skin, pain, and autonomic dysreflexia were originally covered. Best practice recommendations, red flag conditions, referrals, and clinical pathways were agreed on through an e-Delphi technique. Qualitative analysis identified six broad key concepts for self-management, including early symptom recognition, role of SCI peers, knowledge sharing with primary care, general practitioners as gatekeepers, and shared decision-making and highlighted a need to place much stronger emphasis on mental health and well-being. Design workshops and end-user testing provided key insights about user experience, functionality, and content for the SCI-HMT. The co-design process engaging end users, including people with SCI and general practitioners, enabled a shared understanding of the problem and identification of important needs and how to meet them. Informed by this process, the SCI-HMT is a freely accessible resource supporting SCI self-management, shared decision-making, and early problem identification.
目前缺乏方便消费者使用的工具来帮助和支持脊髓损伤(SCI)患者在社区内自我管理复杂的健康需求。本文介绍了新的脊髓损伤健康维护工具(SCI-HMT)的共同设计过程。 SCI-HMT的共同设计采用了混合方法,包括快速审查、对多学科医护专业人员进行的电子德尔菲调查(n = 62)、对SCI参与者(n = 18)和全科医生(n = 4)进行的访谈、焦点小组(n = 3,分别有7、4和4名SCI参与者参加)、与利益相关者进行的设计研讨会(n = 11、8)以及最终用户测试(n = 41)。 SCI-HMT (healthmaintenancetool.com)是在参与式研究的基础上,综合多种来源的数据而开发的。最初涵盖了膀胱、肠道、皮肤、疼痛和自主神经反射障碍等五个重点健康维护问题。通过电子德尔菲(e-Delphi)技术,就最佳实践建议、红旗条件、转诊和临床路径达成了一致意见。定性分析确定了自我管理的六大关键概念,包括早期症状识别、SCI 同伴的作用、与初级保健共享知识、全科医生把关、共同决策,并强调需要更加重视心理健康和幸福感。设计研讨会和最终用户测试为 SCI-HMT 的用户体验、功能和内容提供了重要见解。 最终用户(包括 SCI 患者和全科医师)参与的共同设计过程促成了对问题的共同理解,并确定了重要需求以及如何满足这些需求。在这一过程的启发下,SCI-HMT 成为一种可免费获取的资源,支持 SCI 自我管理、共同决策和早期问题识别。
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引用次数: 0
Self-Reported Prescription Opioid Use Among Participants with Chronic Spinal Cord Injury 慢性脊髓损伤参与者自述的阿片类药物处方使用情况
Pub Date : 2024-02-01 DOI: 10.46292/sci23-00050
J S Krause, N. DiPiro, Clara E. Dismuke-Greer
Individuals with spinal cord injuries (SCI) experience high rates of prescription opioid use, yet there is limited data on frequency of opioid use and specific medications being taken. To examine the frequency of self-reported prescription opioid use among participants with SCI and the relationship with demographic, injury, and socioeconomic characteristics. A cohort study of 918 adults with SCI of at least 1-year duration completed a self-report assessment (SRA) that indicated frequency of specific prescription opioid use based on the National Survey on Drug Use and Health (NSDUH). Forty-seven percent of the participants used at least one prescription opioid over the last year; the most frequently used was hydrocodone (22.1%). Nearly 30% used a minimum of one opioid at least weekly. Lower odds of use of at least one opioid over the past year was observed for Veterans (odds ratio [OR] = 0.60, 95% CI = 0.38, 0.96) and those with a bachelor's degree or higher (OR = 0.63, 95% CI = 0.44, 0.91). When restricting the analysis to use of at least one substance daily or weekly, lower odds of use was observed for those with a bachelor's degree or higher and those with income ranging from $25,000 to $75,000+. None of the demographic or SCI variables were significantly related to prescription opioid use. Despite the widely established risks, prescription opioids were used daily or weekly by more than 28% of the participants. Usage was only related to Veteran status and socioeconomic status indicators, which were protective of use. Alternative treatments are needed for those with the heaviest, most regular usage.
脊髓损伤(SCI)患者使用处方阿片类药物的比例很高,但有关阿片类药物使用频率和服用的特定药物的数据却很有限。 目的:研究脊髓损伤患者自我报告的处方阿片类药物使用频率以及与人口、损伤和社会经济特征之间的关系。 一项针对 918 名至少患有 1 年 SCI 的成年人的队列研究完成了一项自我报告评估 (SRA),该评估根据全国药物使用和健康调查 (NSDUH) 显示了特定处方阿片类药物的使用频率。 47% 的参与者在过去一年中至少使用过一种处方类阿片;使用频率最高的是氢可酮(22.1%)。近 30% 的人每周至少使用一种阿片类药物。据观察,退伍军人(几率比 [OR] = 0.60,95% CI = 0.38,0.96)和拥有学士学位或更高学历的人在过去一年中使用至少一种阿片类药物的几率较低(OR = 0.63,95% CI = 0.44,0.91)。如果将分析范围限制在每天或每周至少使用一种药物,则可以观察到拥有学士学位或更高学历的人群以及收入在 25,000 美元至 75,000 美元以上的人群使用药物的几率较低。人口统计学变量或 SCI 变量均与处方阿片类药物的使用无明显关系。 尽管处方类阿片存在广泛的风险,但仍有超过 28% 的参与者每天或每周使用处方类阿片。使用情况仅与退伍军人状况和社会经济状况指标有关,这些指标对使用具有保护作用。对于那些使用最频繁、最经常的人,需要采取替代治疗方法。
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引用次数: 0
Are Clinical Prediction Rules Used in Spinal Cord Injury Care? A Survey of Practice 脊髓损伤护理中是否使用临床预测规则?实践调查
Pub Date : 2024-02-01 DOI: 10.46292/sci23-00069
Rowan H. Boyles, Caroline M. Alexander, A. Belsi, P. Strutton
Accurate outcome prediction is desirable post spinal cord injury (SCI), reducing uncertainty for patients and supporting personalized treatments. Numerous attempts have been made to create clinical prediction rules that identify patients who are likely to recover function. It is unknown to what extent these rules are routinely used in clinical practice. To better understand knowledge of, and attitudes toward, clinical prediction rules amongst SCI clinicians in the United Kingdom. An online survey was distributed via mailing lists of clinical special interest groups and relevant National Health Service Trusts. Respondents answered questions about their knowledge of existing clinical prediction rules and their general attitudes to using them. They also provided information about their level of experience with SCI patients. One hundred SCI clinicians completed the survey. The majority (71%) were unaware of clinical prediction rules for SCI; only 8% reported using them in clinical practice. Less experienced clinicians were less likely to be aware. Lack of familiarity with prediction rules was reported as being a barrier to their use. The importance of clinical expertise when making prognostic decisions was emphasized. All respondents reported interest in using clinical prediction rules in the future. The results show widespread lack of awareness of clinical prediction rules amongst SCI clinicians in the United Kingdom. However, clinicians were positive about the potential for clinical prediction rules to support decision-making. More focus should be directed toward refining current rules and improving dissemination within the SCI community.
脊髓损伤(SCI)后患者需要准确的结果预测,以减少患者的不确定性并支持个性化治疗。人们曾多次尝试创建临床预测规则,以确定哪些患者有可能恢复功能。目前尚不清楚这些规则在临床实践中的常规使用程度。 为了更好地了解英国 SCI 临床医生对临床预测规则的认识和态度。 我们通过临床特殊兴趣小组和相关国民健康服务信托基金的邮件列表发布了一份在线调查。受访者回答了他们对现有临床预测规则的了解程度以及使用这些规则的总体态度等问题。他们还提供了有关其对 SCI 患者的经验水平的信息。 100 名 SCI 临床医生完成了调查。大多数医生(71%)不了解 SCI 临床预测规则;只有 8% 的医生表示在临床实践中使用过这些规则。经验较少的临床医生更不可能了解这些规则。据报告,不熟悉预测规则是使用这些规则的障碍。受访者强调在做出预后决定时临床专业知识的重要性。所有受访者都表示有兴趣在未来使用临床预测规则。 结果显示,英国 SCI 临床医生普遍缺乏对临床预测规则的认识。不过,临床医生对临床预测规则支持决策的潜力持肯定态度。应将更多精力放在完善现有规则和改进 SCI 社区内的传播上。
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引用次数: 0
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Topics in Spinal Cord Injury Rehabilitation
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